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Is my doctor right on ME

Discussion in 'General ME/CFS Discussion' started by Darran321, Feb 25, 2016.

  1. Darran321

    Darran321

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    I have just returned from my latest doctors appointment, I am now seeing a neurologist shortly
    Due to the confirmation from my doctor that he believes I am suffering from ME, before I left he
    Informed me that he has two other patients suffering from ME and he went on to say that the only
    Consolation is you like my other two patients will never catch cold, flu, cough due to my body is stuck
    In the fight and flight system. When I left and got to my car I realished I have not had any of the both
    Since starting with ME 10 months ago, my wife and two children have all been off work last week with serious flu, and I got nothing, why is this,,, strange
     
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  2. alex3619

    alex3619 Senior Member

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    According to what is commonly experienced and discussed, this is right for some patients but not others. However the nature of what we experience when sick may not be the usual experience. In my case it takes me nearly a year to recover from secondary consequences of influenza.
     
  3. ukxmrv

    ukxmrv Senior Member

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    Darran, it's strange for a GP to diagnose ME. Maybe check with him next time to see what criteria he is using. This may vary from country to country.

    There is no evidence that you body is stuck in "fight ot flight mode". This would not personally give me very much faith in a medic if I heard that.

    Some people with ME and CFS get lots of colds and flus others don't. I started in the later camp and then moved into the former. Think I am heading back to the other one now. We have had long threads on this topic in the past here.

    My advice would be to be careful about seeing a Neurologist. If possible research them first.
     
  4. alex3619

    alex3619 Senior Member

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    Actually there is evidence this is wrong, the hypothesis does not stand up to testing or the evidence. However we regularly hear reports of patients who do not get colds or flues like they used to.
     
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  5. Mrs Sowester

    Mrs Sowester Senior Member

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    I was mild for 10 years and caught every virus passing, then 6 years ago caught a big virus that left me moderate - I've had 2 viruses in that time. However I do sometimes get a worsening of my ME symptoms when my family and friends get bugs - I feel I get 'the edge' of a virus. I don't have the same symptoms they do, but I do get more glands up than usual, mouth ulcers, headaches and lose my balance.
     
  6. Invisible Woman

    Invisible Woman Senior Member

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    I don't experience colds and flu like other people - I get very mild symptoms for a day or two and then relapse and end up stuck in bed for weeks on end. Very miserable and absolutely no consolation at all. I know others who do get colds and flu.

    I echo this. This is really very important. In the UK many neuros consider ME/CFS to be a "functional syndrome" or psychsomatic. If you cannot find out much about an individual neuro then check where they trained. The ones that trained together or at the same school will tend to hold the same views.
     
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  7. Sidereal

    Sidereal Senior Member

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    When I had mild ME, I was almost constantly sick with infections, catching everything. Then as the ME got more severe I stopped getting infections altogether.
     
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  8. JaimeS

    JaimeS Senior Member

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    Haven't been able to "get sick" since severe symptoms began. Happened once and it felt good... like my body was working properly for the first time in ages. Then, a few days in... ugh. It took ages to recover properly, too.

    That means I've "caught" something once in four years. And for two of those years, I worked in a public school, a wretched hive of scum and EBV ;)

    -J
     
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  9. taniaaust1

    taniaaust1 Senior Member

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    I had the never get colds thing through out my childhood before I got ME, I was abnormally healthy (I cant remember ever having to take a day off school for cold or flu, I never got chicken pox and other things when my 3 sisters got sick).. When I got EBV though I then got that extremely severe and was sick a whole term off, bedridden most of that time (my sisters never got that). I think the way my immune system was predisposed me to getting severe EBV and then later on ME.

    It sounds to me that your doctor has maybe has looked into ME/CFS to a great degree. Immune systems work in two different directions and some illnesses push it one way, while others push it the other. to learn more about this theory on why many with ME/CFS never suffer from colds and flu's check out http://www.anapsid.org/cnd/diagnosis/cheneyis.html

    I do still now catch colds or flu's less then other people do, to the point I do not worry at all if I'm around someone with a cold or flu as I know I'm quite likely not to get it.
     
    Last edited: Feb 25, 2016
  10. Large Donner

    Large Donner Senior Member

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    Not sure he knows what he means by this. Its either stuck in fight or flight according to him. It cant be both. Not that any of those assumptions is correct though.
     
  11. Deltrus

    Deltrus Senior Member

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    I haven't got he traditional cold or flu for like 8 years but I have bad fluctuating fatigue throughout the day, extremely unrefreshing sleep, and pain on the right side from my jaw to my abdomen, most likely an inflamed vagus nerve.

    I don't believe all people with CFS are stuck in "fight or flight"(sympathetic nervous system) or "rest and digest"(parasympathetic nervous system) but I do believe that these modes are fairly integral to CFS. Infection/dysfunction of the autonomic nervous system seems to result in mixtures of over and underactivation and overall desensitization to many stimuli. For me, it seems the signals from my brain to my organs for the "rest and digest" part of the immune system are not working. I get gastroparesis, shoulder winging from muscle weakness etc. But the signals from my nerve are certainly telling me to reduce locomotion and be tired all day. My nerves in my ear seem to have gotten infection/dysfunction lately and I'm getting tinnitus and vertigo.

    I believe that in CFS many people have immune overactivation but not in a way that is effective, and perhaps the body has self made blind spots.
     
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  12. jimells

    jimells Senior Member

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    The last time I had a "conventional" illness like a "common cold" or influenza was in 2009. A few times I have had episodes of what appears to be a cold, but they only lasted a few hours. Then there seems to be another subgroup of patients who report that they are constantly fighting one infection after another. It would be interesting to know how many patients find themselves at one extreme or the other.
     
  13. Large Donner

    Large Donner Senior Member

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    Isnt it more straight forward to make the assumption that if some PWME just dont get colds or flu its because they have an autoimmune condition where the immune system is constantly on alert attacking "everything"?
     
  14. alex3619

    alex3619 Senior Member

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    We also get colds and influenza from contact with others, or areas with lots of people. Many of us become more isolated, even home or bed bound. I wonder if isolation is a factor here. We simple do not come into as much contact with people. If so then there would be an association between contact with the public and frequency of infection. I really doubt this is the only factor though.

    Autoimmunity itself cannot help like that. However we have subtle and as yet not understood deficits and problems in our immune systems. Anything could lurk in there. It is better to talk of an unbalanced immune system in us than a deficient one, but these things are dynamic. Its very likely to result in different responses in different people.
     
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  15. Large Donner

    Large Donner Senior Member

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    I don't get colds or flu like illnesses anymore and I have two kids in the house who are constantly bringing them home. I don't have an explanation for it. I did however get chest infections for a period quite a while back.
     
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  16. alkt

    alkt Senior Member

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    if our immune system is not working properly then it is possible to have colds and other infections without the full immune response it is not the cold that causes symptoms like a runny nose but our immune response to that cold. so no response from our immune system does not always mean we do not get colds or other infections . i think it is possible that we feel hot and sickly some of the time from an immune response rather than getting the full blown symptoms. considering my own situation over time i could not guarantee that my activities whether physical or mental have been responsible for my symptoms worsening. although in the first 3 years i seamed to catch everything that was going around .
     
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  17. JaimeS

    JaimeS Senior Member

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    Absolutely. I said to one of my docs, "I'm not sure if my immune system is so revved up that it's incinerating everything in its path, or if it's so depressed that it's not able to raise a response to infection at all." I didn't mention the "little bit of both" that PWME seem to have going on. The physician in question nodded at both, like he wasn't sure which, either, but that both sounded plausible...

    -J
     
  18. JaimeS

    JaimeS Senior Member

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    For some, but remember I was in the public school system for at least two of my worst ME years (which I now view as 110% insane, for the record). Still didn't catch anything. Watched all the kids, all the staff come down with stuff like clockwork in the winter and the spring, but nothing seemed to touch me...

    -J
     
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  19. Mrs Sowester

    Mrs Sowester Senior Member

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    I've had the same experience as you Jaime S, despite my life becoming much quieter I'm still surrounded by people with coughs and colds but don't catch them - or I do, but don't have the same immune response. I also get the 2 or 3 days of feeling better than usual before a flare-up of ME symptoms.
    I should add that I go out twice a week (or get taken out like an old lady!) once a week to a tea shop and again to a choir, so I encounter 70+ people a week.
     
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  20. JaimeS

    JaimeS Senior Member

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    It occurs to me that research into what immunoglobulins are high in initial infection might be helpful to us, @Mrs Sowester ...
     
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